The Caregiver Resource page is helping those caring for a loved one navigate the journey and feel better equipped in moments of stress.
Our goal is to improve the quality of life for sickle cell disease caregivers and the people who receive their care. We have partnered with Caregiver Action Network to provide comprehensive resources for caregivers.
Are you caring for someone with SCD and facing challenges? Do you need educational resources? Are you struggling with financial issues or challenges with your employment? If you are a family caregiver and have questions or just need to talk, consider reaching out to the Caregiver Help Desk.
Caregiver Help Desk from Caregiver Action Network offers free support to family caregivers across the country. It is staffed by caregiving experts who can help you find the information you need to navigate your caregiving challenges and support you on your caregiving journey. With Caregiver Help Desk you can:
Help Desk Phone Number: 855-227-3640
To reach to the Caregiver Help Desk, go to caregiveraction.org/helpdesk or click the button below
The Journey Map of a SCD Caregiver is a blueprint of the encounters an individual can go through as a caregiver to a loved one with SCD. This diagram was created by Sick Cells and used during the May 2021 Roundtable on Resources for SCD Caregivers in an effort to visualize an individual’s experience and align resources and support. This caregiver journey map is adapted from the HHS Health+ SCD Initiative and supported by data from Sick Cells’ “My Life With Sickle Cell” Patient and Caregiver Survey (Feb 2020) and the Resource for Sickle Cell Caregiver Roundtable Discussion (May 2021).
The journey map is discussed in 3 phases:
Each phase highlights eight “pain points” or common areas where caregivers experience challenges or barriers that may require support. Below, we have compiled a list of resources to support these areas of need.
In May 2021, Sick Cells in partnership with CAN hosted a roundtable discussion to identified helpful tools and resources to address the specific needs and challenges of SCD caregivers. Following the roundtable, the teams gathered materials and summarized these resources in a Roadmap of Resources. Read our Roundtable Meeting Summary here.
The Roadmap of Resources is here to assist SCD caregivers navigating the healthcare system and to aid their selfcare, family care, and care of their loved ones with SCD. Check out the topics below or view our “Roadmap of Resources” document.
Learn More about SCD from these great resources
Information about complications and treatment
Evidence-based recommendations that can help educate your care teams
Toolkits and resources from community-based organizations (CBO)
Elevating the voices of the SCD community
Resources to help prepare for the change in care during adolescences
Resources to assist with the hospital setting
Resources to help caregivers live well
Grant programs, financial support, and legal advice
Resources to help the family unit
